The Genomera platform boasts over 700 community members who are interested in participating in studies. While several of the approximately 30 listed studies investigate genetics as a related component of health, it is not necessary to have data from 23andMe or other consumer genomics services to join the health collaboration community and participate in studies. There are already 40 participants in the memory study and almost 20 in the empathy study.

The objective of the memory study is to see if genetic variants related to dopamine processing in the brain impact the processing of memories. The study is being conducted in conjunction with leading researchers at the Center of Cognitive Neurorehabilitation in Geneva Switzerland. The participation requirements are to complete an online Memory Filtering Task which takes approximately 40 minutes and a short Demographic Survey.

The objective of the empathy study is to confirm and extend research linking genetic profile and social intelligence, specifically whether individuals with certain genetic profiles may have a greater natural capacity for optimism and empathy, extraversion, and altruism. The participation requirement is to complete two short standardized online surveys for empathy quotient and other personality attributes. In addition, there is an optionally available Personal Virtual Coach app for empathy-building, a sort of SIRI 2.0 for mental performance optimization.

BioCurious meets world: The next big thing to come out of a Silicon Valley garage: BioCurious, a hackerspace for biotech, is now open to the public! For $150 a month, amateurs, entrepreneurs, and professional scientists get access to tools, classes, and community at our 2,400 square foot lab in Sunnyvale. Make genetically-engineered bacteria, sequence DNA, find the tools to get your bio-project growing, or make friends with amateurs and experts in the community.

BioCurious features a full wet lab, office space, and co-working area. Membership at BioCurious includes access to gel electrophoresis, real time PCR, incubators, fridges, freezers, and we are adding new equipment all the time. Last year, 239 amazing people donated $35,319 on Kickstarter to catapult BioCurious out of the garage and into a full lab space. Over the past year, the BioCurious volunteers established a non-profit business entity, held meet-ups, acquired donated equipment, evaluated lab spaces, and established safety and waste disposal procedures. Why? We believe that innovations in biology should be accessible, affordable, and open to everyone. We’ve built a community biology lab for amateurs, inventors, entrepreneurs, and anyone who wants to experiment with friends.

Education: Beginners can become experts in their spare time. In one of our first classes, we made bacteria glow using DNA from jellyfish, the “hello world” experiment for synthetic biology. Hands-on classes in DNA sequencing, bioinformatics, hardware hacking, and more, are on the schedule. Our “Business of Biotech” lecture series is perfect for people trying to break into this growing field. And classes for everyone from executives to pre-K young scientists are in the works. Membership is not required, and most classes are open to all ages. Visit biocurious.org to sign up – spaces go quickly!

Community: Find co-discoverers, co-founders, and friends at BioCurious, whether you’re looking for the creative spark of a novice or the technical expertise of a professional scientist. BioCurious is the first lab of its kind in the Bay Area, allowing anyone to participate in science. Our members come from backgrounds spanning economics, philosophy, and art, as well as science and engineering. Members can host meet-ups. Planned activities include science projects, art shows and movie nights. We are collaborating to build something amazing. That’s the spirit of BioCurious.

Innovation: Have a great idea, but don’t want to pursue it at work or school? We think experiments need a place to flourish. Builders and makers need a place to prototype. And good ideas need to become reality. BioCurious is a not-for-profit organization and does not make any claim to member intellectual property. We encourage start-ups and entrepreneurs to use our facilities and meeting rooms, and have special deals for dedicated bench space, equipment housing, and cold storage.

Change the World: We’ve come a long way over the last year. Our community now includes over 500 members in the Bay Area. At the Maker Faire we wowed thousands of visitors, and won an Education Award. We presented at an International Synthetic Biology Conference. We piloted hands-on biotech classes for Singularity University. And now we’re pleased to open the doors of our new lab in Sunnyvale. We’re starting a new biotech revolution in the Valley; come join us. Become a member today! Visit www.biocurious.org. Check out upcoming classes (www.biocurious.org/classes). Come see the lab, get a day pass or take a tour, and see the next big thing to come out of a Silicon Valley garage. Stay Curious, Eri Gentry, Executive Director Founding Directors: Kristina Hathaway, Joseph Jackson, Tito Jankowski, Raymond McCauley, Josh Perfetto BioCurious: 845 Stewart Drive, Suite C, Sunnyvale, California Current hours: 12 noon – 10 PM weekdays, 10 AM – 10 PM weekends

A call for papers has been extended to October 17, 2011 (2 pages are due on October 17, the full 6 page submission is due on January 1, 2012). Paper topics should be in the areas of personal wellness programs, self-tracking experimentation, collective intelligence, citizen science, and DIY community tools and projects.

The specific focus of the conference is self-tracking technologies for monitoring personal health conditions such as sleep, diet, excise, vital data, and for analyzing personal medical and genome data, and collective intelligence as a potential resource to find useful knowledge for personal wellness from knowledge from others.

More information is available at the conference website. DIYgenomics will be running a session at the symposium.

Many things are needed to scale citizen science from small cohorts on the order of a few individuals to medium and large-sized cohorts. Building trust in online health communities, motivating sustained engagement from study participants, and lower-cost easier-access blood tests are a few things that are needed.

Legal and ethical issues are also a challenge. Independent ethical review is appropriate but the current IRB (Institutional Review Board) requirement for funding and journal publication is a barrier to crowdsourced study growth. In 23andMe’s early studies, there was a definitional debate as to whether their research constituted ‘human subjects research,’ and whether there was a difference in interacting with subjects in-person versus over the internet.

The U.S. HHS (Health and Human Services) definition of ‘humans subjects research’ is research that “obtains (1) data through intervention or interaction with the individual, or (2) identifiable private information.” (45 CFR 46.102(f)) The strict reading is that any research obtained by ‘interacting’ with a human subject (e.g.; likely all personalized health collaboration community research) would require an IRB for the funding needed to do it at scale.

Acknowledgement: Thank you to Thomas Pickard for providing background research

If you could take a genetic test as an infant and prevent diseases from occurring later in life, would you? If the costs of testing and follow-up treatment were low enough I think almost everyone I know would answer yes to this question. Indeed, if the tests and treatments were offered free of charge by government or a health care provider, you could argue that denying the test could be an unethical act of “willful blindness.” As genetic testing gets more and more accurate, these ethical questions become much more than classroom debate topics, they become real issues.

For me, the question of genetic testing has special significance because I live with chronic back pain caused from a disease that many experts in the field believe has a genetic component. While researchers have not isolated the gene that caused the development of my Scheuermann’s disease, multiple case studies of monozygotic twins with the disease suggest a genetic linkage.

If a Scheuermann disease-causing gene were to be isolated, then early genetic testing may offer huge rewards to those who find out they have the gene early in life. Special spinal braces are often indicated for Scheuermann’s sufferers because the disease causes a curving of the spine. One must use these braces early in life, usually as a teenager; because once the spine is fully developed they lose effectiveness. Early diagnosis is important for Scheuermann’s disease just like many other chronic diseases including heart disease, and type 1 diabetes to name a few. There are treatments for all of these diseases I just mentioned; the key is knowing early enough to implement them.

The knowledge that you are genetically predisposed to a chronic disease can be a lot to handle. It can have a number of far-reaching implications. Genetic testing offers the possibility of knowing whether or not you could pass your disease on to your children. This kind of knowledge can be hard to process but that does not, in my opinion, mean that we should ignore it. Knowledge of our diseases gives us power over them, keeping us from falling into the role of “victim”.

For me, the knowledge that I have Scheuermann’s disease means a number of things. It means I have to swim at least an hour a day to keep my pain in check. It means I have to do a series of stretches everyday to keep my core strong and to keep my tight hamstrings, an unusual symptom of the disease, loose. Swimming, stretching, and a top-quality mattress enable me to control my disease and live a happy, fulfilling, and hopefully long life.

The revised study results were presented by the team at the American Aging Association meeting in June 2011. These data featured nine single SNP associations (versus two previously), and linked 281 SNPs to signatures for exceptional longevity (versus 180 SNPs previously). The overall conclusion remained unchanged – that

centenarians, while having the same disease mutational profiles as non-centenarians, have other specific aspects to their genetic profiles which indicate a signature for exceptional longevity

The second Sage Commons Congress was held in San Francisco CA April 15-16, 2011. Conceptually an ‘open science,’ ‘data 2.0,’ ‘health 2.0,’ and ‘medicine 2.0’ event, the main purpose was for a variety of working groups to collaborate and outline goals for future work. The open science focal points for the group were data (aggregation, packaging, access, and usability) and public engagement. Of particular note was the launch of a new journal,Open Network Biology, which aims to facilitate experiment reproducibility through improved access to underlying data. The event is summarized here, and conference videos and presentations are available here.

Sometimes it’s disturbing to find out how your genes may affect you. Whenever I tell people that genes may affect your proclivity to credit card debit, or your chances of having an eating disorder, or whether you may become an entrepreneur, people look at me with surprise.

It’s a given that genes dictate your physical make up and risk for disease . But people are still uncomfortable with the idea that genes play a part in our personality. How we think; our choices in life, we like to think of these as entirely our own…not something that our genes can predetermine.

As of now the link between genetics and personality, or behavioral genetics is still a relatively new field. To untangle our motivations from our genes and or environment and our upbringing is a difficult process. But some day in the future, I may be able to take a DNA test and find out I am 30% more likely to incur credit card debit than the average person. The question becomes, what do I do with this information?

Most of you may have heard of Malcolm Gladwell, famous social psychologist, and author of The Tipping Point and Blink. What you may not know about Gladwell is that he used to be a runner in his teens. A good one. In fact Gladwell was the one of the best middle distance runners in Canada. In high school, he beat runners who eventually went on to win Olympic medals.

Genetically Gladwell was a running prodigy. But here is where choice comes into play. Gladwell chose to give up running and turn his mind to social psychology. Other runners who were maybe not as genetically gifted chose to continue to run and went on to be best athletes in the sport. As an interesting article on the myth of prodigy observes:

“Really what we mean … when we say that someone is ‘naturally gifted’ is that they practice a lot, that they want to practice a lot, that they like to practice a lot.”

Knowledge of genetics can serve to inform our choices and behaviors in life. If I know that I am 30% more impulsive and likely to incur credit card debt than the average person. I can chose to use this information in one of two ways. I can let it become my mental crutch, and feel victimized by my genes. Or I can be mindful and find strategies and skills to improve upon this weakness.

In the end, I firmly believe that what you chose to do with information about your genetics is more crucial than what your genetics tell you.